Support Groups for Lyme – Are They Needed?

Several years ago a person attended one of my Lyme Support Group meetings and went back to her doctor with questions. Their doctor recommended that they not attend Lyme Support Group meetings anymore. They came back one more time to tell me that. I found that very concerning in that I can’t imagine any health care practitioner telling someone not to go to any other type of Support Group. Why Lyme?

I have been running the NS Lyme Support Group for many years now and I like to think it’s helpful for those that are struggling. We don’t push treatment protocols and we don’t tell everyone that they have Lyme and/or tick-borne diseases.

We listen and don’t judge. We let people vent. We provide an opportunity for those that may not have any other support system to feel like they are not alone, as dealing with Lyme and tick-borne diseases can be VERY lonely.

At our last meeting there was a “newbie” that was recently diagnosed with Lyme after 3-5 years of struggling with steadily increasing symptoms. The diagnosis was via Nova Scotia health, after the “newbie” requested a test. They had a lot of questions about the lack of awareness and knowledge in this province. They also made a lot of good points regarding what is being done poorly here, in the rest of Canada, and beyond.

I thought I would provide a synopsis of some of our discussion to give people an idea of what goes on in a Lyme Support Group and to get people thinking about what needs to be done to help those that may be dealing with tick-borne diseases or even other multi-systemic illnesses. I would also love to hear your thoughts on whether a Lyme Support Group is needed and, if so, why you think doctors are so against them.

One of the issues that arose was regarding how we can help others. It was noted that many people that may be dealing with a later stage of Lyme may not be working so funds are limited. They may also not be able to drive, especially at night. Because of memory issues, for some, they don’t remember all that doctors tell them and they don’t always remember to take notes or record the session (which some doctors don’t allow). The idea of a mobile support system was raised several years ago but never moved forward due to a number of reasons, not least of which is that many people were too sick to volunteer to help others. Getting patients to their appointments; providing them with healthy, prepared food; visiting; etc., is needed.

With many other illnesses, people not dealing with it will help raise funds; they will provide food; they will offer drives; they will jump in with both feet and help wherever they can. With Lyme, many that are not dealing with it personally cannot understand how it can impact someone. They have heard, over and over again, that it is basically a rash and flu-like symptoms. That it’s rare, hard to get, and easy to treat. They have heard that once treatment has been received, it’s eradicated. There is very little information readily available on how untreated and under-treated Lyme can result in severely debilitating symptoms, or even death in some cases. Lyme carditis is no longer as rare as it once one. Cases of Neurologic Lyme are also increasing. Even the fact that there is a fairly large percentage of people that continue to experience symptoms after treatment is unknown by many. I guess it’s fortunate that “Post Treatment Lyme Disease Syndrome”, or whatever you want to call it, is now receiving some press due to “Long Haul COVID” which has some similar symptoms. This may result in some help for Lyme patients.

Unfortunately, even those close to people that may be dealing with Lyme and/or tick-borne diseases sometime tend to back away as they don’t understand what’s happening. Those suffering may lose their friends and even their family. They can be left entirely alone and dealing with an illness that requires many layers to eradicate, especially if they have been dealing with it for awhile.

All this beg the questions – How do we get those not already personally dealing with the issue to help those that are? How do we get others to understand the possible ramifications of something as mundane as a tick bite? How do we elevate the discussion? How do we get people to take this seriously and BELIEVE what their loved ones are telling them? How do we get doctors interested and concerned enough to better educate themselves and listen to their patients?

The “newbie” noted that they hadn’t given any thought to Lyme and tick-borne diseases and that it was all new to them. They noted that the only information available appears to be on social media and the internet and that you need to already be aware of what you are looking for to go look for information. There was nothing to suggest “Could it be?”. When this was raised, I remembered sitting in the Infectious Diseases office a few years ago waiting for my appointment with an ID doctor. There were signs in the sitting room regarding Sexually Transmitted Diseases, but that was it. There was nothing about Lyme and tick-borne diseases. There was no sign saying “Could It Be?” These are needed in all walk-in clinics, ER’s, doctor’s offices, and anywhere else people may go looking for help. They would not only help those dealing with a multi-systemic illness that could possibly be caused by a tick bite, but would also remind medical professionals to consider tick-borne diseases when presented with patients that don’t fit a specific diagnosis. They could be dealing with early or late disseminated Lyme and/or other tick-borne diseases.

The “newbie” also noted that their doctor is a pill pusher, which unfortunately seems like a fairly common problem here in Nova Scotia, and no doubt elsewhere. Rather than trying to get to the root cause of an issue, doctors tend to push symptom relief in the form of pain killers, etc. I’m aware of one new doctor to the province that took on a retiring doctor’s caseload. The new doctor had to wean most of their patient’s off of pain medications. This discussion brought up the problem with Canada’s health care system. In many places doctors are paid per patient and have a limited amount of time to spend with their patients if they want to pay their overhead, and give themselves a wage. With multi-systemic illnesses, you need to be able to spend a considerable amount of time with a patient to discuss all that is going on. A quick, or accurate, diagnosis, cannot happen over multiple appointments, over a long period of time.

During the meeting it was raised, once again, that Lyme is supposed to be a clinical diagnosis. We do not yet have any testing that will definitely tell you whether you have Lyme, or don’t. There are several good questionnaires now available to help with a diagnosis. One of them is the General Symptom Questionnaire-30, which was prepared by doctors from a number of research facilities in the United States – https://www.frontiersin.org/articles/10.3389/fmed.2019.00283/full. It was also noted that those with early or late disseminated Lyme generally have fluctuating symptoms, with every day being different than the last. If a knowledgeable doctor could take the time to go over all of the symptoms and how they are presenting, a quick and accurate diagnosis could be made. As this is not the case at the present time, a dedicated clinic, with doctors fully versed in all stages of Lyme and the various tick-borne diseases, is sorely needed. The sooner the better.

Also raised during the meeting was the issue of doctors, with only general knowledge of Lyme, who prescribe antibiotics to those that have been dealing with the issue for weeks, months, or even years, yet don’t offer any other type of help. Of significant importance is the possibility of a Jarisch-Herxheimer response to the antibiotic which can severely impact their patient in a number of ways. Here are two articles worth reading: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7667941/ and https://www.cmaj.ca/content/194/27/E939. The “newbie” noted that they became quite ill upon starting the antibiotic and located information on a “Herxheimer” reaction on the internet but their doctor had never heard of it. Providing antibiotics to someone that had dealt with the issue for a considerable period of time can result in significant issues. Yet another reason for a dedicated clinic(s), populated with health care professionals that are FULLY educated on all aspects of Lyme and tick-borne diseases.

Every meeting is like this. It jumps around and touches on many different issues. We chat about what people are doing that is helping them. We chat about different areas where help can be found, including Maple, the Holistic Health Centre, and Signature Health, which were all mentioned during our last meeting. We chat about ways people can help boost their immune system by improving their sleep quality/quantity; reducing stress; getting a little exercise; eating better; etc.

We also chat about how every single person is different when it comes to early and late disseminated Lyme. This is due to so many factors, such as: how long ago they were bitten; where the bite occurred on their body; whether more than one thing was transmitted; what other health issues they were already experiencing; and so much more. Since tick-borne diseases can affect everyone differently, doctors shouldn’t expect one treatment to help them all; but, for the most part, they do.

We have also been fortunate to have had an alternative/complementary health care practitioner sit in on our meetings on occasion. They listen to our stories and comment when, and if, appropriate. They also provide some much needed advice on occasion. This has been very helpful for many.

If you think you might be dealing with tick-borne diseases, or you are a support person for someone who does, feel free to reach out and attend one of our monthly NS Lyme Support Group meetings. We have them on the second Tuesday of every month at noon and have been holding them via Zoom since the start of COVID. At some point we will get back to in person meetings in the Bedford area, but will continue on with Zoom as well as people from throughout the province, and beyond, have been able to attend.

I think you can tell from the above that I think Lyme Support Groups are needed, but do you? Would love some feedback.

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